Thought Leadership & Innovation Foundation (TLI), a not-for-profit organization that works at the nexus of science, technology, and public health, announced that the Limb Loss and Preservation Registry (LLPR), the first national registry of its kind, is now open, giving early adopters and industry stakeholders, including manufacturers, payers, prosthetic clinics, and hospitals the ability to tap into an unprecedented level of information.
TLI supports the Mayo Clinic in launching the LLPR through the National Institute of Child Health and Human Development (NICHD). The centralized data warehouse was designed to collect relevant patient data and perform analysis to improve the quality of care and patient outcomes. The LLPR has also achieved authorization from the Federal Risk and Authorization Management Program, a government-wide program that promotes the adoption of secure cloud services across the federal government by providing a standardized approach to security and risk assessment for cloud technologies and federal agencies.
“The LLPR addresses a substantial public health knowledge gap by giving stakeholders the ability to analyze the data by age, gender, and type of limb loss, preservation surgery, or prosthesis to support decision-making for the long-term needs of these individuals,” said Reed Hartley, TLI’s executive director “The LLPR is vital to help patients maintain a high level of functionality, refining rehabilitation approaches and guiding the improvement of prosthetic devices. This national registry aligns with our efforts to support evidence-based decision-making, improve healthcare delivery and enhance quality of life or underserved patient populations.”
The LLPR offers information for key stakeholders:
- Manufacturers: Data that shows how prosthetic products positively impact the lives of patients and guidance for innovation in prosthetic devices
- Payers: Data that shows feasible alternative care plans for patients with limb loss and limb preservation surgeries, and how prosthetic products positively impact the lives of patients to encourage reimbursement
- Hospitals: Reliable and up-to-date, researchable data to understand patient outcomes after limb-loss patients leave the care setting
- Clinics: Best practices from prosthetic clinics around the country for the best patient outcomes, from fittings to treatment plans
“Despite the significant personal and societal impact associated with limb difference, limb preservation and limb loss, until now there has been little current data on effective clinical practices and technologies in this field,” Hartley said. “This data repository is being hailed as the first national registry of its kind, geographically and demographically representing the U.S. population to improve prevention, treatment and rehabilitation effort.”
To learn more visit llpregistry.org.